Speaking engagement: OBN’s ‘BioTuesday’ on rare disease R&D
The November edition of ‘BioTuesday’, organised by OBN, will focus on rare disease research and development (R&D) in the UK and features […]
Tag: Rare disease
Survey launched for UK-based rare disease patient advocacy groups on gene therapy decision aids
A new survey has been launched to better understand how rare disease patient advocacy groups (PAGs) in the UK account for their […]
ANNOUNCEMENT: Laurence joins NHS England’s specialised blood disorders Clinical Reference Group (CRG)
We are pleased to announce that Laurence Woollard is joining NHS England’s specialised blood disorders Clinical Reference Group (CRG) in a personal […]
On The Pulse news round-up for H2 2022
It’s been a busy second half of 2022 at On The Pulse HQ. To close out the year, here’s a round-up of […]
Rare Disease Day 2022 – ‘Patient & Public Involvement in Era of ATMPs’
In celebration of Rare Disease Day 2022, we have partnered with the Association of the British Pharmaceutical Industry (ABPI) to raise awareness […]
Talking informed consent for gene therapy on BloodStream™ podcast
The latest episode of BloodStream™, a bleeding disorders community podcast, is now freely available to listen to, featuring a guest appearance from […]
NEW PUBLICATION: Improving informed consent for gene therapy
We are excited to share our latest review article on informed consent practices in the age of genetic medicines, published in the […]
READ: Article on the ‘Covid Generation’ and health transition
The winter 2020/21 edition of Rare Revolution Magazine is out today, featuring an article from On The Pulse, titled: “Spotlight on the […]
Rare Disease Day 2020 – Q&A by EUCOPE
In recognition of Rare Disease Day 2020, On The Pulse director, Laurence Woollard, was put in the hot seat for an interview […]
VIDEO: Watch Episode 1 of The Culture Shift with Dr Ann Hagell
The first episode of our brand-new video series, The Culture Shift has finally landed! Watch in full below with our special guest, Dr […]